the fibropoetics of cancer: someone is watching you
In this essay I explore the state of my body and mind after undergoing surgeries and other treatments for cancer and how it intersects with my lifelong fibromyalgia and interest in poetry. Quoted phrases reflect comments I have heard, usually often, in my life; some of these are English paraphrases from the Japanese.
[For my earlier essay "Fibropoetics" please see Wordgathering Vol. 12, Issue 1 (March 2018).]
THE BODY'S SECRETS
But I hardly touched you! the doctor exclaims when I cry out in pain. I explain to the doctor that I have fibromyalgia. He is young, energetic and cheerful.
Outside of the hospital, nobody perhaps not even I want to hear about certain bodily functions, about plastic bags attached to your waist and red intestines sticking out of your stomach looking like Japanese pickled plums, about urine and feces inadvertently on your clothes. I can't look closely at myself except for the tasks I have to perform to take care of myself but even then I try to look away. I am grateful the mirror fogs up when I am in the shower. I still have not really seen what I look like from behind because I refuse to make the effort and worry I'll scare myself.
I don't want to regret surviving my surgery.
But I still want a seat at the table.
I view myself from outside, an outsider, an outcast. The maternal part of me has an arm around my shoulder, sees me as a little girl in need of a mother. I identify so strongly with the poems "We are Everywhere" where the speaker of the poem while watching on the street people with disabilities wants them "to notice I'm kin" (but how can they when my disability is almost invisible?) and "What We Mourn" where the speaker talks of being thought of as "imprisoned in a foreign body" but loves her body "as you love your own country" (both poems in Bartlett et al, 2011) that I cry.
I return repeatedly Emily Dickinson's poems about pain, such as in #650:
Pain — has an Element of Blank
A not admitting of the wound
as well as to Georg Trakl's somber reflections and ghostly landscapes:
Black skies of metal.
(from Johnson, 1961 and Trakl, 2010, respectively)
Their words appear to soothe me when everything else fails to.
The surgical procedure I have recently undergone "remains one of the most destructive surgical procedures in gynecologic oncology" (Bacalbasa & Balescu, 2015) and has been described as "barbaric" (Olson, 2009), "ultra radical" (Bacalbasa & Baescu, 2015) and "mutilating" (Andersen & Hacker, 1983).
I see myself sitting at the table, a young girl with curly hair and a humpback, though I didn't acquire the latter trait until I was older I think; I don't really have a hump exactly as far as I know, more rather an extremely rounded upper back and shoulders that perhaps look like they are in the wrong place? On other days I imagine my middle aged face and aging body sitting or lying on my side. What does that girl feel? I ask myself.
Why don't you stand up straight? (with disdain); something I still hear quite a lot. Or Are you shy? I used to lack confidence like you, assuming not that I can't straighten up but refuse to because I am timid. One foreign gentleman takes my photograph in profile to show me how poor my posture is. What do you think of this? he asks. What I think is that I'd rather not have my photograph taken in profile. What I think is maybe you are a jerk.
Why do you have a stocking on only one leg? Another observation I'd rather not reply to, I wear a compression garment on my right leg after lymph node removal led to a condition called lymphedema. Japanese summers are very hot and muggy so like many other women during this season I wear short skirts. I am grateful that it is now autumn, because I wear black socks on both legs, over the compression stocking, that reach above my knees. Only somebody checking my legs very carefully would notice one leg is larger in circumference than the other. Particularly now that I have lost so much weight post-surgery (7 kilograms and I was quite thin even when at 57 kg) the difference is not very noticeable. This comfort is short-lived; my stocking begins to fall down because of my extreme weight loss. I have to wait a long time for a new stocking. In the meantime, I wrap up my leg in elastic bandages every day, much harder to conceal from the public.
Yet how lucky I am that I can often avoid staring and intrusive comments.
In the hospital I am sexually assaulted by creatures which both resemble unkind relatives (two relatives in particular who were verbally abusive to me in real life) and balloon figures. I cannot move and nobody can hear me scream. I am so terrified by these dreams, which feel very real to me upon awakening, that I am afraid to sleep. For a hazy minute I am happy to discover that these were dreams, leading me to feel that the operation itself was also a dream. But then, with a sickening feeling in my stomach and an intense feeling of dread I realize that I am in the hospital and I did have the operation. I wish in vain that I had not had it. I remember my husband affectionately touching the back of my head as I was being wheeled into the operation room with a heavy feeling in my stomach. I imagine my body which I can only feel but not see and want to cry. Small green and red blinking lights flicker continuously ominously in the dark, on various pieces of strange medical equipment to which I am attached in the ICU where I spend several days.
I am in severe physical pain.
I call the nurse to ask for more pain medication. But we already are giving you a lot of medicine! I tell her I am afraid, I am having nightmares. She looks at me in a detached manner.
I hurt so much that I can't bear it. I wonder if I can detach myself from the machines ad kill myself in the hospital. There are some decks from which I might hurl myself but it is possible I wouldn't die but simply further disable myself. I try chanting: nam myo hyo renge kyo and I pray to Allah, Muhammad and Jesus asking them to help me.
I tell the nurse: I hurt so much I want to die, to even kill myself. I know saying this may help me, that the hospital might feel liable if I tried to kill myself in their institution. As a result, a psychiatrist is assigned to my case. She reviews my chart and notices that my fibromyalgia medicine was stopped for the day of my surgery but not resumed after. She tells me that once I am back on my usual medicines the nightmares will go away and my pain should be less. This happens.
I still have nightmares but they don't terrify me to the degree the early ones I had in the hospital right after surgery did. In one nightmare my husband and I are both trapped in a maze. The maze has black and white swirling constantly changing geometric patterns. The patterns create the maze. It is very difficult to find the exits. I manage to find one exit but am quickly found by the guards who force me to return to the maze. This happens over and over. However later I find another exit and am able to escape by disguising myself and my vehicle as a guard's. Although I manage to also help my husband escape and outside the maze find in certain houses special keys that help you get out of the maze I live in fear that the guards will find me and send me back.
In another dream I and one of the unkind relatives who has miraculously become kinder are trapped in a tunnel. There is no way to get out except when floodwaters enter the tunnels and flush us out as if we are in a giant towel bowl. It is very dangerous being flushed like this; the water is rough and there is no guarantee I will be able to grab onto a piece of land to keep me from being flushed out to an even more dangerous area.
In a different dream I live in an upscale Chicago neighborhood although in reality I have only lived, long ago, in poor districts. Rather than a normal apartment however my living quarters are designed like a shop with large windows and no curtains blinds or shutters. I desperately want to have sex, alone or with someone. But no matter where I try to hide in the apartment — behind furniture, in dark corners, et cetera — I can be seen from the outside by someone standing in the street. So with great frustration I give up.
ADJUSTING TO A NEW LIFE
My friends say Bravo to me, Congratulations, You made an effort! (gambarimashita ne in Japanese) and You are an inspiration. I am merely trying to survive. After getting back home from the hospital I start to pick a fight with my husband. My anger flows the next day, I want to hit or break something. I scream as loud as I can and then sob violently, grabbing my husband's arms, putting each around me. After this I often cry myself to sleep. I cannot sleep without pills nor have I been able to since my cancer diagnosis years ago. On the very worst days I imagine myself cutting myself with a knife; of course I don't actually do this, I only think about it.
Currently I am slowly regaining my strength and a more positive outlook although the latter will take time. I take a very large number of medicines each day. My morning self-care routine takes quite a lot of time. I have black marks on my teeth, presumably from medicines. I have to sit on a cushion that I carry with me but cannot sit or stand for long. I still have a painful bump on my head from passing out in the hospital, hitting my head on a chair as I fell unconscious in my room. I still have some dizzy spells, when I am tired.
From what I have read about women who have had the same operation I have had, the physical symptoms of pain, fatigue and insomnia continue to plague them long after the official post op recovery period (about six months long) has been completed. Some women say it takes them a year to get back to normal, but it is a "new normal." As far as psychological adjustment, most women manage to find satisfaction from their hobbies (in some cases these have to be modified or abandoned however) and friendships but their body image does not necessarily improve (see for example Andersen and Hacker, 1983).
I am trying to continue to love my body, even if for now it is perhaps only the maternal form of love I extend to a body that has seen a lot of hardship and change over the past several years that continues to interact with my lifelong fibromyalgia. I am happy to be alive and lucky that, although my surgery is rightly termed a radical one, disfiguring and disabling, there was a type of treatment available to me.
Oftentimes I say to myself out loud when alone: Things will be alright.
Weeks have gone by since I began writing this essay. I have successfully, I think, been able to expand my idea of a beautiful body to include my own. I am not mourning what once was but am trying to learn to live competently in my new body. Dickinson and Trakl seem a bit dark. I am looking into the light.